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Saturday, February 18, 2017

Nick Dupree, 34, died at New York Presbyterian Hospital February 18,
2017. A trueRenaissance man, Nick
fought for Medicaid reform in his home state of Alabama before moving to New
York City in 2008, where he continued blogging about the issue at Nick’sCrusade, as well as writing, painting and creating comics. (The painting to the right is one of Nick's self-portraits.)

Stone
Brook University Disability Studies professor Pamela Block, who worked with
Nick through the VENTure Think Tank that focuses on the needs of people like Nick who are
dependent on ventilators, said: “He
dared. He persisted. He defied. In the end, it wasn't his will or even his body
that failed him, it was the system that betrayed him by sending him again and
again into places that were deadly to him.”

Nick also gained national social media attention when he and his partner decided it was safest to stay in their 12th floor apartment in lower Manhattan when Hurricane Sandy hit NY City in 2012. In addition to people on social media rallying to make sure Nick and his partner were safe, their experience brought national attention to the inadequacy of New York City's disaster preparedness for people with disabilities. NPR's Talk of the Nation devoted a show to the problem. New Mobility magazine wrote about the issue and featured Nick in a 2013 cover story.

“I’m Nick, a disability rights and Medicaid reform
activist, writer, comic creator, painter…. I’ve been advocating for
ending the institutional bias and other long-term care reforms for years. I
fight especially hard for awareness and action on issues that affect those of
us who, like me, have complex care needs and are vent-dependent. We are a
vulnerable population that spans multiple diagnoses and every age group, and,
to stay in our homes and communities, we need change in long-term care.

I was born with a super rare metabolic disease, as was my
younger brother Jamie. I’ve been on various forms of life support since age 9
when an infected surgical site—the destructive Luque rods surgery occurring on
Friday, September 13th, 1991—triggered a crash, a “metabolic domino effect”
that killed what little muscle tone I’d had previously. I got my first feeding
tube in October 1991, my first vent in February 1992 (full-time BiPap) then was
trached and vented in November 1994.

I grew up in and around the Spring Hill College campus in
Mobile, Alabama, where I studied from Fall 1998 when I entered at age 16, until
2005. The Jesuits’ social justice teachings heavily influenced me.

Nick’s
Crusade

I’m most known for my two-year
campaign to change Medicaid in Alabama, dubbed “Nick’s
Crusade.” It has, I hope, created a positive ripple effect.

Then, as now, states were
required to care for kids, but once you hit age 21 (too often) you’re cut
off. I call it Medicaid’s 21 cut-off. “Aging out” of
home care needed to survive and thrive, have a life and stay outside of
institutions, though widely ignored, is an ongoing defect in our system that’s
actively harming people who are usually the least equipped to bribe lobby the powers that be, to speak
out. So much preventable harm is not prevented because the state Medicaid
system (in whichever state you’re in, varying wildly)
is so purposefully bare bones or too slow to adapt.

This is such a
dire problem in many (especially Southern) states, particularly for those
of us who are the most severely disabled, on “life support,” as we tend to be
marginalized, looked on as “vegetative” or borderline not “here.”

That someone died due
to their home care getting yanked because of an arbitrary age
cut-off, the 21 cliff , in America, in the 21st century, should shock
you. It points to a broken gov’t, broken health care models, broken state-to-state
Medicaid systems, broken nonprofit sector, broken ideologies that do not
account for the realities of human frailty, disability, chronic illness and
what these really mean day-to-day, the sheer funk and squishiness inherent
to mankind, political brokenness in the South, and a deep spiritual brokenness
and hardness of heart writ large. I agree with certain religious thinkers
on the Right that America needs a change of heart not just a change of regime,
not just more funding for X, Y, Z, but insist care for the most disabled be
expected in any virtuous system. I want the meanness of spirit that’s
spread like a virus to change first and foremost, and for the concept that we
are all images bouncing from the same prism, we are all tentacles of
the same divine octopus, to replace the hate.

In the Southern states,
long-term care in the home, and more broadly, Medicaid—the only source of such
care for most people—is more hotly disputed than in the North. To put it
mildly.

Alabama Medicaid Agency had no plan for continuing home care for people beyond
age 21, even for the most severely disabled ventilator-dependent Alabamians. By
January 2001, too many other vent-using young adults had already received their
bloodless form letter or slip with computer code from Montgomery announcing the
“termination” of their life-sustaining care, and had “aged out” of
federally-mandated EPSDT care, and been dropped by home care just for turning
21, put in awful positions.

Another story on WPMI aired autumn 2002,
Bruce Mildwurf reporting on what happened to the Morris family after Alabama
Medicaid arbitrarily ended care for Patrick, who has Duchenne’s MD and depends
on a ventilator to breathe too, when he turned 21. Nonetheless, the Alabama
legislature balked at any proposals to deal with the 21 cut-off problem.
Medicaid’s legislative liaison had home field advantage in Montgomery, up
and down the halls of power week after week vs. my infrequent visits up I-65,
and she constantly lobbied the relevant committees not to spend on home care,
touting ridiculously inflated cost estimates. The proposed Nick Dupree
Adult Care Act never made it onto the Alabama Senate floor. No action was taken. The
reprieve for me, (younger brother) Jamie, and future vent-dependent Alabamians
reaching 21 came not from the politicians, but from newly appointed federal
Judge Mark Fuller, who compelled Alabama Medicaid to fix the issue.

On February 10, 2003, U.S. HHS
secretary Tommy G. Thompson announced
approval of Alabama Medicaid’s waiver program that’d fund in-home
services for 30 vent-dependent people hitting the 21 cliff in the future. After
the feds quickly greenlit the program—the uncharacteristically speedy end to
the labyrinthine CMS waiver approval process coming largely thanks to the
committed efforts of Mobile’s then-U.S. House Rep. Jo Bonner—it
was kicked back down the line to Medicaid in Montgomery, and they had to iron
out the details and the implementation. They eventually did… at the
11th hour before I turned 21 on February 23rd, 2003. The
program has since expanded to help more people, but initially only covered
me. The TA (Technology Assisted) Waiver was created for the care of Alabamians
on mechanical ventilation, and endures, as do we.

My advocacy and eventual plea
in federal court in Montgomery led to local and national coverage of my fight
to maintain a life outside of hospitals and other institutions, and the fights of others
on vents.

Independence from
institutional models of care remains so important, socially, spiritually,
medically, in every area. Though it can be extremely difficult
maintaining in-home care day-to-day, staying healthy and in the community is
pivotal. I continue advocating for those of us, who, like me, have complex and
intensive needs, to be allowed the in-home support necessary to stay out of
high-risk hospital settings. People misunderstand… I was talking survival, and
they were talking rights, independence, more abstract concepts.

Community is survival. The
greater the medical needs, the greater the necessity to hold fast to kith and
kin, to have a circle of support protecting and looking out for you.

My primary skill-set is in writing. I come out of the
Spring Hill College writing program, where I gravitated toward creative
nonfiction and poetry. Though problems maintaining nursing care in the wake of
my “victory” in the Medicaid battle prevented me from completing my degree at
the Jesuit college, I’ve never stopped writing.

Since August 28, 2008, I’ve lived in New York City
alongside/with my partner Alejandra – first, in Coler-Goldwater state rehab
hospital (for 378 days), and later, at home in our community.

I have continued creating both fiction (online comics I
paint with the trackball mouse, such as Theodore Roosevelt and the Rough Riders vs Zombies, and Bunnies in Space) and nonfiction (essays on history,
politics, and health care). One of my essays, on the impact of cuts in the
federal budget and universal health care as a human right, was published as
part of Greenhaven Press’ reference volume Health Care: Opposing
Viewpoints in 2008.

About Me

I am full-time Mass Communication faculty at Towson University in Maryland and adjunct faculty in the City University of New York (CUNY) Master's in Disability Studies program.
I research media and disability issues and wrote a 2010 book on the subject: Representing Disability in an Ableist World: Essays on Mass Media, published by Advocado Press.
The media have real power to define what the public knows about disability and that's what I research.